Advocacy and Volunteer Work When You Are Chronically Ill

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Advocacy Work and Chronic Illness

Advocacy and volunteer work when you are chronically ill

Today I’m tackling a topic that a great number of my readers are involved in – advocacy and volunteer work when you are chronically ill.

Over the past decade I’ve found that as I’ve gotten sicker, I’ve struggled to find purpose and meaning in life after losing so many things that were important to me before I got sick. A great number of us find satisfaction and purpose with volunteer and advocacy work.

But what kinds of volunteer work are appropriate for those of us who are chronically ill? Is it possible to find volunteer work that won’t drain our already limited energy resources?

The answer is yes! There are plenty of ways you can support if you are inclined to do so while also keeping a firm hand on your health limitations.

Today, I’ll tell you about the types of volunteer work I’ve been involved with over the decades. I would love to hear from you about this if you’re an advocate or a volunteer! Drop a link in the comments if you’d like to highlight something you are particularly proud of.

If you’re not involved with volunteer or advocacy work, that’s ok too! We all find our own solutions to contributing to a life that is meaningful.

Thanks so much to Sheryl at A Chronic Voice for providing me with this opportunity to write about this topic this month.

Volunteering when you're chronically ill - Remember to find something that makes you happy.

Volunteering – My Thoughts

Volunteering is a great way to meet new friends with similar interests. I’ve volunteered to teach and I’ve assisted at orphanages and battered women’s shelters through direct work and via fundraising events. I’ve provided free content for health organizations that were looking to plump up their websites; and I’ve also offered free editing and website service with new health organizations.

As a Canadian in Taiwan, I was involved with the Canadian Chamber of Commerce before it became too much for me. (Recognizing that I needed to step away took longer than it should’ve, but it was a rewarding experience for me which is why I stayed so long.)

Right now, I’m still volunteering with women’s organizations, which is something I’m passionate about. The women I volunteer with understand my health challenges and they are incredibly supportive. This type of work fosters women to women friendships. I’ve found myself endlessly grateful for the friendships I’ve made through advocacy and volunteer work.

It’s immensely satisfying, but I’ve learned you need to pay attention to what you’re doing and how you’re doing it.

PRO: Being chronically ill has given me more time to dedicate to advocacy and awareness work. I love this kind of work!

CON: Too much will make you sick. It’s important to find that balance. You can check out my post on pacing if you’re interested in learning more about how I balance my work output with volunteer work.

Tips for finding volunteer work when you are chronically ill. This is what worked and didn't work for me. My Several Worlds

Volunteer Work When You Are Chronically Ill

SEARCHING

There are hundreds of unique volunteer opportunities for individuals who are chronically ill. The main reason we do so is to give back to the communities that support us.

You’ll not only be doing something rich and rewarding, but you’ll also have an opportunity to immerse yourself in a topic you’re passionate about. Volunteering can give you a chance to make a difference. It can also give you something to look forward to if you’re not working and you’re looking for a positive way to fill those hours at home in bed.

Searching for the right kind of volunteer work when you are chronically ill can be tough. I’ve loved all the volunteer positions I’ve been a part of, but over the past five years, it has become clear that some types of volunteer work are sustainable for me and others are not.

For example, I’ve been involved with the Canadian Chamber of Commerce in Taiwan since 2014. I held an official board position which involved organizing, attending, and hosting a number of events for Canadians in Taiwan for several years. When I started volunteering with this position, I was in remission, but I quickly overdid it and was not so aware of pacing myself back then. I also underestimated how much time out that I’d have to commit to attending government functions, networking events, delegation events, and fundraising events.

Those events were hard on me. I was out of the house at least four times a week for the Chamber. I loved everything that we accomplished and in 2014, I was able to do all of it. But as time went by and more event planning and work added up on my plate, I realized I was spending most of my time hosting board meetings and planning events that I could not attend!

I did a lot of soul searching with this volunteer position and eventually ended up stepping down from it last year because my health was suffering from it. Now I support from afar and if they need help, I’m happy to pitch in if I can.

As for in person events – I’ve had to give those up completely because of my health and that’s ok! I’ve found other ways to contribute and this experience has taught me so much about myself and what I am capable of and what I need to say no to.

So what does a volunteer do when they can’t attend events in person anymore? She searches for something that is manageable and that suits her home schedule.

Time and energy output are two things you really need to think about. Eventually, a perfect fit came along with a group called Taipei Ladies, which is a group of 2,500 women who exchange information and provide support where it is needed. We host events, but they’re infrequent. It’s nice to go every once in a while and feel like I’m participating. And since this group is online, it has proved to be very meaningful since I can help from home on my own time.

  1. When you are searching for volunteer opportunities, think about your time and how much you can give.
  2. Ask if there are specific things that are required from you. Are you required to attend all events? How many hours do they expect you to put in each week? Do you need to be online at certain times throughout the week? Are they aware of your health challenges and are they willing to work around them with you? Most importantly, do they understand that sometimes you might not be able to volunteer because you’re flaring?
  3. Make sure that the hours are manageable and what you’re doing brings you joy and ZERO stress.

How do volunteer and do advocacy work when you're chronically ill. My Several Worlds.

HOPING 

This prompt is an easy one to tie into volunteering because at the end of the day, we all want to help others and hope that we can help or support as best we can.

Volunteering can be the adventure of a lifetime! But it comes with a unique set of challenges that you’ll want to consider:

  • Communication barriers – Simply put, those of us who are chronically ill have to communicate well and be up front about what we can and can’t do. Most organizations will keep asking for more. Be strict and specific about your time and availability.
  • Work Culture – Getting involved with a new work culture can be overwhelming. It can often be a bigger adjustment than we think it will be. I’ve found that asking specific questions about what organizations expect from their volunteers is great. If they’re vague, perhaps it might not be a great option for you. Also, don’t be afraid to ask about challenges that the organization is facing. This is  really important  as most organizations aren’t up front with this information.
  • Limited resources – The communities that you volunteer in usually don’t have extensive resources or educational materials. Be prepared to think ahead and be creative.

Honestly, though, volunteer work when you are chronically ill can often just mean providing support, sharing your own story or knowledge, lending a skill set to someone who needs it, or even fundraising for certain causes that need attention and financial assistance.

Every helping hand can provide hope and awareness.

Volunteering - What Are Your Options When You're Chronically Ill?

HONOURING 

I’ve always viewed volunteering as an honor.

It’s a great way to build your skill set on your CV. More importantly, it is rewarding and it can open many doors for you. If you can find the right position that respects your limits, you’ll find that this is something that can create a lot of passion and good feelings about the work you’re doing.

A great many of us choose to get involved with advocacy work. What a wonderful way to honor yourself and other patients who suffer from the same thing you do!

 

RESPONDING 

My response to volunteer work is this: Giving makes us happy! There is no doubt about it!

We all know what it feels like when we do something for someone else. When you lend a helping hand to someone in need, when you give someone your time and just listen, when you do something just to see the look of joy on someone’s face – that’s what we’re all in it for.

Volunteer Work - How You Can Contribute When You Are Chronically Ill

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian expat who has been living abroad in Asia since 2003. I moved from China to Taiwan in 2006. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. Follow Carrie on on Twitter @globetrotteri or on Instagram at https://www.instagram.com/carriekellenberger/.

19 thoughts on “Advocacy and Volunteer Work When You Are Chronically Ill

    Anne Sweet

    (June 17, 2020 - 10:35 pm)

    I love that you have found volunteering so satisfying, giving can certainly make you happy.

      Carrie Kellenberger

      (June 19, 2020 - 1:28 pm)

      Hi Anne! Me too! It really does make me happy, especially the women’s groups. Female friends are the best and I enjoy chatting and spending time with them so much when I’m able to. Living in Taiwan keeps me so far away from family, and with the pandemic, there is zero chance of seeing my mom and dad this year. I think a lot of expats for their own families here and I’ve been very fortunate to find these people and count them as my own.

    Cynthia

    (June 18, 2020 - 11:13 am)

    Great post about volunteering Carrie! Listening to and acknowledging what our bodies are actually capable of at the moment is so important. So many things to think about when we have little energy to spare.

      Carrie Kellenberger

      (June 19, 2020 - 1:27 pm)

      Thank you, Cynthia! This has been such a rewarding experience for me, before I got sick and afterwards. It’s funny how being sick so often can strip so much of your self worth away. I felt really useless for a long time, but finding the right volunteer and advocacy work has helped to build my self-esteem back up, plus it’s all feel-good stuff. Which is, in my opinion, something we can all use when we are feeling so yucky most of the time!

    Katie Clark

    (June 19, 2020 - 7:01 pm)

    Love how you put the June prompt to use. I didn’t even realize it until iI had gotten to the Hoping subtitle? This is an area I’ve wanted to consider more. I’ve been do guarded of my time and activities. Currently, helping my adult kids with their lives by babysitting and moral support has been my main outside activity, but I hope to be involved more in my community at some point. Thank you for sharing your experiences. It gives me food for thought?

      Carrie Kellenberger

      (June 19, 2020 - 7:39 pm)

      Thanks so much, Katie! I really like the opportunity these monthly link-ups give me to explore different ideas, but I’ve found it helpful to have some sort of a theme going with the prompts. If I’ve read correctly, you are a teacher and we all know that teachers give to the community ALL THE TIME. My parents were both teachers and their volunteer work in our community went on for decades. They’re enjoying their Golden Years now, but I think it comes naturally with teaching. Also your advocacy work with awareness is commendable, my friend. Every time I see you post, I can see the warmth, compassion, and sincerity rolling out with you. At the heart of all of it is helping hands and helping hearts, right?

    Claire

    (June 23, 2020 - 12:39 am)

    Your advocacy and volunteer work is amazing Carrie, I love how you write about it here for the linkup. Definitely very worthy of being nominated for a WEGO award!

    Shruti Chopra

    (June 23, 2020 - 1:12 am)

    This was so good to read – it made me think if I’ve ever been part of any volunteer work… it took me a while but when I had better mobility I would help in organising seminars that helped people improve their mental health. Now I think about it – it was an incredible high but I don’t regret leaving it because it demands a lot out of me. So for now, I stick to being an ear for friends 🙂

    And Carrie… I just wanted to say… whenever I read through your posts, I feel enriched and so mesmerised by your kindness and your desire to do good. I feel blessed to have connected with you. Thank you for reaching out the way you do.

    Alison

    (June 23, 2020 - 11:25 pm)

    I love this post! Volunteering can be so important and powerful! I think one of the most important things for anybody is to have a sense of purpose – with that you can go most anywhere, and without it you generally feel lost! I spent time the past several years helping communities I’m a part of in various ways, and know about that joy that comes from helping others. I’m so glad you’ve connected with this and agree that there are many ways to help the communities we are part of!

      Carrie Kellenberger

      (June 26, 2020 - 3:58 pm)

      Alison,

      I greatly admire the work you are doing and your advocacy work for so many groups. I’m in awe of your videos and the work you do for so many communities! Having a sense of purpose has really helped me stay present with illness and has given me something to focus on that isn’t my body. 🙂 Thank you so much for your support!

    Naomi

    (June 25, 2020 - 12:53 am)

    I really appreciated your take on these prompts. I signed up to be a volunteer at the migraine trust in the UK in March and was really inspired by their chief exec& had a great convo with someone else. And then they both left. I’m left feeling a bit unsure about it but they don’t ask for too much so its not hard to stay with it and see. Since then I’ve also started the business so less spare time anyway! There are so many things id love to get involved with but socialising is a huge trigger for me so just have to pace, as you have learnt to.

      Carrie Kellenberger

      (June 26, 2020 - 4:02 pm)

      Hi Noami,

      I’ve set your online shop to ‘see first’ on FB and have enjoyed seeing your creations so much. I just wanted to mention that even though it has nothing to do with volunteer work. It just makes me smile so hard every time something pops up with you two.

      I’m so sorry to hear that you were inspired by people at Migraine Trust who eventually left. It’s always hard to have a good team in place that supports you or that you sync with and then have to say goodbye. This has happened a lot to me over the years with my Chamber work because we’re affiliated with the Trade Office. Whereas the Chamber directors are all long time expats in Taiwan, the trade office representatives are coming and going every three or four years, and that’s always hard, not only because you get a great team going and then you have to work with someone new, but also because they become friends and you have to say farewell!

      I hear you with socializing! That is the main reason I’ve had to leave most of my volunteer work. I’m finding with fibro that it’s becoming harder and harder for me to be in groups of people and I do best with six people and under. Thanks so much for stopping by!

        Naomi

        (June 28, 2020 - 3:38 pm)

        Wow that’s so lovely to hear about Facebook! This week’s been a bit slow as less picture-worthy boat work continues.
        Yes changing people around you I think is also difficult because making new relationships/friendships takes energy. I didn’t know the migraine trust folk very well but the shadow of a hope is enough to miss

    Sheryl

    (June 27, 2020 - 2:28 am)

    Thanks so much for joining us Carrie! It’s always such joy to see a friendly face in the linkups, and to know a bit about what they’re up to both the downs and ups. Sending much love!

    Rhiann

    (June 28, 2020 - 5:07 am)

    Hi Carrie, what a fantastic and insightful post! Thank you so much for sharing! I know from experience that when diagnosed with a life-long condition, and left unable to work, you can begin to feel useless and lose all sense of purpose. It’s excellent reading a post like this and finding out about great opportunities that are out there, that we can sometimes do even from home. Well done for all your hard work and passion for the causes you get involved with despite everything you endure with your symptoms. You are an inspiration!

      Carrie Kellenberger

      (July 31, 2020 - 3:51 pm)

      Hi Rhiann! I’m so glad you enjoyed it. THANK YOU! I’m so sorry I’m late replying. My old computer died and I’ve just bought a new one. It’s amazing. I can see comments again! LOL. I haven’t blogged at all this month because it has been too hard doing it from my laptop while helping two other clients with their sites. Hallelujah for new technology and here’s to many more writing adventures together, my friend! I will rejoin the blog-up in August.

    Caz / InvisiblyMe

    (July 27, 2020 - 10:02 pm)

    Wow, you should be hugely proud of the volunteer and advocacy work you do. I imagine your involvement with the Canadian Chamber of Commerce was fascinating, though I’m not surprised it took longer than it ‘should’ have to step away. It’s not easy recognising, admitting and acting on the fact that a role is too much for you because of your health. When I lost my regular 9-5 job due to ongoing surgeries, working for a charity to support those in the community, it hit me harder than I cared to admit. It still does now, weighing down with a feeling of guilt. You’re so right about the need for balance. Fantastic post to support and inspire others while being realistic about what we’re capable of doing.

    Caz xx

      Carrie Kellenberger

      (July 31, 2020 - 3:42 pm)

      Hi Caz,

      Thanks so much for stopping by! Thank you so much! Yes, it was a lot of fun and very interesting. I learned a lot in that role, but stepping away was one of the hardest things I’ve had to to do. I stopped watching what they were doing for the rest of the year last year to give myself a break and have just started following again and I’m not feeling so bad about it now. I haven’t had a regular job in years. I work from home and that’s the best fit for me because I’m too sick to go to an office or hold something down outside of my home five days a week. This year has been hard. I’m struggling to hold on to our business, but so far so good. I guess I should be proud we made it through the pandemic here in Taiwan, but it has been stressful. That feeling of shame/guilt in not being able to work like everyone else is still there, but I’m holding my own and doing what I need to do for balance. I’m way more involved with health organizations now. I love doing that because it’s a cause close to my heart and it allows me to connect with other patients like me. Thanks again and I will be by soon to check your posts!

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